Users & Survivors in Academia (USA) is a support, advocacy, and resource-sharing group for graduate students (both master’s and doctoral) with psychiatric disabilities or current/past experience in the behavioral health system. USA started primarily for us to reach our peers across the country and engage in mutual support and advocacy around issues we face in higher education settings. Over the past year, USA has grown to 30 members in states across the country, and has quickly evolved into a forum to organize individual and systems advocacy, and support one another in self-advocacy in our own academic institutions. Our newest developments are the Lived Experience Research Network (LERN), and an advocacy project: Discrimination in Higher Ed, which aims to collect stories from others and garner support for concrete systems change.

Through discussions among the members of USA, as well as conversations with students in other settings, we’ve heard stories of discrimination and stigma that would horrify any advocate: students kicked out of school or banned from campuses and dormitories (in some cases permanently) because of a first break (psychosis or mania) or suicide attempt; denied admission to clinical programs, practica or internships because of their own lived experience; repeatedly told that students like them (i.e. with a “mental illness”) could not finish a PhD or succeed in academia; punished for challenging discriminatory treatment; routinely forced to listen to comments from other students and faculty concerning the deep “deficits” and “pathology” of service users and survivors living in the community. Few students have escaped any of these experiences and in the worst cases, their narratives and often devastating impact on their lives and careers are nothing short of heartbreaking.

One is alone: Our Stories

Although we personally have experienced many instances of discrimination across this range, and have heard many more from others, we will share two anecdotes to illustrate the types of discrimination graduate students may face in higher education settings:

Nev:

I first experienced (and was labeled with) psychosis in the first year of a small and competitive philosophy PhD program. Other graduate students apparently alerted my advisor to what they perceived to be “unusual” behavior and, out of the blue, I was called by a faculty member and asked not to come in to school and told that my graduate assistant responsibilities would be carried out by another student. When I tried contacting faculty who I thought of as allies, they informed me that they had been instructed not to talk to me; my advisor slammed her door in my face when I showed up, sobbing, to ask for more information. I later discovered that they thought–based solely on a psychosis label and with no probable cause—that I might “bomb a building.”

Although I was eventually reinstated, it was only a matter of time before the department elected to dismiss me from the program entirely in spite of maintaining a 4.0 GPA, receiving top marks on my (blinded) departmental review papers, and having no disciplinary violations. The department would not even allow me to enroll in further courses, instead granting me an MA (in spite of not having met the official requirements), presumably in order to better guarantee my silence. I was told that there was little to no chance that I would or could finish a PhD. Rather than getting angry, I became severely depressed—nearly gave up on any sort of academic career and concluded that I must not be smart enough to succeed as a scholar or researcher. It took me years to regain a healthy level of self-confidence; I’m now finishing a PhD in psychology.

Laysha:

While in my PhD program in public mental health, a post-doctoral fellow gave a presentation about bipolar disorder (which I have been labeled with) where he showed a graph of mania and depression, and said “up here is where people who are manic shoot other people; down here is where depressed people shoot themselves.” He explained that people get so irritable that they become violent when they are “manic” because they “can’t get their way.” I was fortunate that the professor corrected this particular statement, but not the overall stigmatizing nature of the presentation. I suppose I have gotten so accustomed to hearing these things that I did not react outwardly. I also feared that any reaction would be perceived as personal because I’m “out” in my program—our righteous anger and hurt can easily be construed as a “mental health problem” in itself. In many cases discriminatory statements like this can cause stress and anxiety, make it difficult to concentrate or absorb information, and impact one’s performance.

We tell these stories to illustrate our own personal experiences with different ends of the spectrum of discrimination and harassment in academic settings. While Nev’s story demonstrates a clear violation of laws to protect people with disabilities, such as the Americans with Disabilities Act (ADA), Laysha’s story is an all-too-common experience in academia of more insidious discriminatory remarks that one could not take legal action against.

The rates of success for disability discrimination cases are shocking: Only 2-6% of people who sue for employment or education discrimination based on disability ultimately win in court (Lee, 2003). When you look at cases based on mental disability, the rate is even lower, with over two thirds of cases dismissed because the defendants, although clearly legally disabled, are unable to prove they actually “qualify” for the jobs or positions in question. The legal scholar James Concannon (2012) argues that the ADA has “disproportionately disqualified individuals with mental impairments from coverage, and from the continuing stigma attached to mental disabilities.” We cannot win this battle alone—we must fight together. USA and LERN have provided opportunities for us to connect in solidarity and organize for systems change, but these issues need to be taken further and faster in order to address ongoing discrimination and barriers in higher education and prevent others from enduring these experiences.

Starting a movement: Your stories

As graduate students, we are trapped in a hierarchical bureaucracy where we have the least power of any members of this community. Oftentimes it is easier to ignore comments rather than speak out; to leave a program and transfer to another one rather than litigate. Like many oppressed groups, if we speak we risk retaliation; if we remain silent, nothing will change. Because of this, we have started an advocacy project to create a base for systemic change in university policies and approaches to students who identify as having a psychiatric disability or have lived experience of the mental health system.

To our knowledge, there are currently no advocacy projects in the United States specifically geared towards addressing problems associated with risk monitoring for early intervention, involuntary leaves of absence and/or dismissals, denial of graduate program or clinical practica applicants, or refusal to provide graduate and doctoral accommodations based on a psychiatric disability. In order to fill this gap, our organization LERN has developed a Discrimination in Higher Ed (DHE) systems advocacy project. The DHE working group, led by Beckie Child, a PhD student Portland State, has created a survey designed to gather information about students’ experiences of discrimination, accommodation denials, and other disability-related barriers in postsecondary settings. We are also currently working on developing a media campaign, a critical guide to navigating mental health issues in higher education, and collaborations with national legal advocacy organizations.

Silence: A nail in the coffin of science

While we will both likely finish our doctoral degrees within the next year, it has not been without heartache and heartbreak, and we recognize that many more will still be “in the trenches.” It has taken internal and external resources for us to get to this point–resources that not everyone has or knows that they have inside of themselves or around them. We have often had to just pull-through. Supposed protections of people with disabilities have done little to level the playing field–much of the time we are on a steeper playing field than our graduate student peers who do not face this discrimination. Routine and systemic discrimination against any group–people with disabilities, psychiatric histories, women, racial/ethnic minorities, and LGBTQ individuals–continue to perpetuate academia as an “old boy’s club”. Federal funders of higher education, such as the National Institutes of Health (NIH), have made recruitment of students from diverse backgrounds a priority (see, for example, the NIH “Increasing the Diversity of the NIH-funded Workforce” project), yet this goal can never be attained if the academic institutions themselves make it difficult or impossible for students with psychiatric disabilities to gain admission to or finish graduate degrees. The inevitable next step is that research and clinical practice will continue to be fed by a stream of people without lived experience or disability who have always dominated these fields–and thus continue to dominate discourse on policy, practice, and evidence.

The issue of whether to disclose or not also remains rife with problems. Some individuals have no choice but to “come out.” The rumor mill gets going and there is no way of concealing a history of treatment or diagnosis. Others come “out” as a matter of necessity (i.e. “registering” a disability–often requiring an ICD or DSM code and details as to the kind and type of “symptom–in order to qualify for ADA accommodations), while still others, aligning with principles of social justice, actively choose to stand in solidarity with the larger community of those who identify as having psychiatric disabilities or histories. Some researchers wait until they have secured tenure or other secure job opportunities to come out. We realize that there are many risks associated with disclosure during a graduate program–it perhaps may be the more logical choice to do what you can to “pass” as a “normal” until you can be sure that you have jumped through all hoops that [to some degree] protect you from discrimination.

The ADA protects “qualified workers” with a disability. A wrinkle in this protection for graduate students is that we are in a no-person’s land in between students and workers in which we are told that we are not protected by the ADA as paid (or unpaid) workers and the accommodations we need do not fit within those granted to students in college classes. We have more than our fair share of responsibilities as “qualified” workers, and yet unequal rights compared to other workers. Nothing can change until they know we are here, and that diversity in experience or self-identification does not change the fact that we are “qualified” to be here. This fight is even harder if allies who are faculty members, other graduate students without histories of psychiatric disabilities, and other people with lived experience who are not in graduate school do not fight alongside us. Unlike countries such as the UK, Canada, and Australia, the United States has aggressively pursued a continuing pipeline of researchers and clinical practitioners without lived experience (users and survivors) of the behavioral system by ignoring our presence and perspectives as emerging researchers and clinicians and either turning a blind eye to discrimination or actively engaging in it. (As an example, in 2007 two psychologists published a survey of US graduate admissions directors in which disclosures of mental health problems during the admissions process was categorized as a “kiss of death”; the authors did not challenge this practice in their conclusions, and no other faculty, academics or federal administrators wrote letters of responses to protest this overtly discriminatory norm.)

Although other countries are not without their share of problems in this area, without our voices as both users/survivors and trained researchers and clinicians, the United States will continue to emphasize building a biogenetic evidence-base without a balanced approach to exploring alternative hypotheses and innovations in support, intervention, and prevention.

A moral imperative: What you can do

We urge activists, advocates and allies from around the country to join us in documenting and contesting discrimination and harassment in postsecondary institutions. Click here to participate in our survey; email us if you have further ideas for systems advocacy; speak out among your own contacts within higher ed settings.

Laysha Ostrow is the CEO of Live & Learn, Inc. She received her PhD from the Johns Hopkins School of Public Health in 2014, and Master’s in Public Policy from Brandeis University’s Heller School in 2010. She identifies as a person with lived experience of the psychiatric system, the special education system, the disability system, and the family court system.

Nev Jones is a doctoral student interested in the intersections of psychiatry, psychology, philosophy, neuroscience and "mad" studies. She is co-director of Chicago Hearing Voices.

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4 COMMENTS

You guys are fabulous! (I had to log in and tell you that before I even finished reading the article.) It is a great campaign you are waging and it will help people far, far beyond the graduate schools. So many colleges and even high schools are developing almost militarized approaches to any sign of distress from a student that might be “psychiatric.”

Reading about how you were treated, Nev, I almost put my fist through my laptop. These people would be ashamed to treat an accused “Al Qaeda terrorist” in such an utterly inhuman manner. For anyone who doesn’t already realize it, you are proving that the “brain disease” model is not reducing stigma but fueling it to a horrifying degree.

First thing I gotta do is email this to my sister who teaches at a state college on the West Coast, and order her to pass it along to all her friends. Will try to pass it to other professor types as well. Mazel Tov!!

Kudos on your work in an excellent advocacy program. After reading this I can’t help but feel that higher education needs to grow up. The modern world needs a new pipeline of educated people with lived experience. This was decades ago, but I was treated similarly in high school. My alternative education “plan” was a negligent joke where I often sat alone in dark, empty classrooms – then they “graduated” me despite not having the credits just to easily get rid of me, playing it like they had done me a wonderful favor. Years later I earned my Bachelor’s cum laude, but the experience was so disillusioning I decided not to pursue a higher degree, (which on a personal level, I don’t regret.) Congrats on soon receiving your degrees!

I need some help. I am a graduate student and I feel that the program is being discriminatory against students who work. I am a single mother who needs to work. I was asked during the interview for acceptance if I planned on going full time or part time. I said full time not knowing my schedule. I now go full time, and I was told by another professor that only students who do not work are admitted to the program. The class schedule is so that no one can have a steady job. How in the world can anyone support themselves with a ridiculous schedule? My professor insinuated today that I seem stressed and that I have too big of a work load? Is any of this legal?

Get admitted under the presumption that you will be full time, then force them to allow you to go part time. They can’t kick you out just for going part time, and if they try to you can fight it.

Here’s the real problem: you are in graduate school and not on a stipend. Why don’t you get paid for the teaching you do (I assume you’re being used as a TA while doing your studies, as this is the normal course of things for non-cash-cow graduate programs)? Why aren’t you getting scholarships or grants? Why aren’t you receiving financial help? If no one else in the program doesn’t have to work, how are they managing? Do they get paid? If so, why aren’t you?